Life Rolls on for the Reeve Foundation

You know the story: Famous Superman actor has unthinkable accident, experiences near-death and wrestles with his will to live. Assured by his beautiful wife that she will always be there for him and that his children need him, Christopher Reeve, now a vent-dependent quad, decides he wants to live. In steps a visitor, Dr. Wise Young, while Reeve is still struggling with rehab. The spinal cord injury community needs you, says the premier SCI researcher in the world. Will you be the face of the community?

Reeve was beloved by most, resented by some, but no one can deny his influence, especially in his quest for a “cure.” What many do not appreciate, though, is the vital role of his wife, Dana, the one who championed the foundation’s Quality of Life and Paralysis Resource Center programs. It is her ongoing influence, as well as Christopher Reeve’s, that enabled the foundation to survive after the fledgling nonprofit lost both its founders in the space of less than a year.

While supporting research is still a priority, since 1999, more than $13 million has been awarded in QOL grants to more than 1,700 deserving recipients dedicated to serving the paralysis community. Following Dana’s death, an experienced nonprofit professional, Peter Wilderotter, now CEO, came aboard and guided the foundation through the economic malaise that has devastated numerous nonprofits in the past few years. He is ably supported by Joe Canose, senior vice president for Quality of Life, who has been with the Reeve Foundation for many years. Susan Howley leads the organization’s research efforts, and Maggie Goldberg manages marketing and communications. There are others, of course, too many to name.

The Reeve Foundation is still evolving, reaching deep into the paralysis community to nurture its growing grassroots base. What follows is a small sampling of stories, mostly about Reeve ambassadors, who model the mission — and the heart — of the foundation.

Life Rolls On: Jesse Billauer

By Sam Maddox

Jesse Billauer, national outreach director for the Reeve Foundation, brings his own style to the quality-of-life cause.

We’re at Ocean View High School in Huntington Beach, Calif. I can’t see any waves from the campus; maybe you can from the roof. But the GPS tells me surf city is just a few blocks down the street. Just the week before, the U.S. Open of Surfing was held here; today looks like another perfect beach day, but it’s right in the middle of WOW week, an orientation for the incoming freshman class. The kids, maybe 200 or so 14-year-olds, are herded into the school gym for a guest speaker.

Activities director Kevin Fairman tells them to settle down and to expect to be blown away by the speaker. This is the fifth time Kevin has invited Jesse Billauer to pump up his students. He told me before the crowd comes in that I’ll be able to hear a pin drop once Jesse starts. “He’ll have them in the palm of his hand.” Kevin signals for the lights to dim and runs a videotape of Diane Sawyer and the Today show.

Sawyer says the program is about brotherly love and defying odds, and inspiration. We are introduced to Jesse and his older brother Josh. Jesse is a teen athlete and up-and-coming surf king. He gets the girls, says his dad. Then tragedy: Jesse is clobbered by a wave at Zuma Beach and driven into a sand bar. “I didn’t have time to put my arms up. I went numb and felt all tingly. I knew something was wrong.”

Paralyzed. Jesse was just 17. The clip is quick to the redemption scene: Josh and Jesse start a foundation, first to support Jesse’s rehab, and then to help the spinal cord injury community. They call it Life Rolls On. Jesse decides he wants to get back on a surfboard. His surf buddies make it happen. Josh weeps, Jesse rolls on.

“And now, ladies and gentlemen, Jesse Billauer.” In the back of the gym a door bursts with light; Jesse emerges and wheels across the floor. He’s now north of 30 but he still carries a certified coast-with-the-most patina of cool, black on black with perfect tan and two-day beard stubble. He easily connects with high schoolers. “I want you all to close your eyes.” They actually do. “Now visualize your dreams. Think about how you see yourselves. Think about how you want to see yourself in a year. In five years.”

He tells them how his own dreams have flashed before his eyes each time after a traumatic event. First, at 16, when he was ejected from his car. “As I lay there on the Pacific Coast Highway I thought about that big movie I wanted to be in, or about being a pro surfer, about having a wife and kids. I told my dad when he got there, ‘Please, don’t let me be paralyzed. I’d rather be dead.'” He survived that one with broken bones, convinced of his invincibility. Six months later the wave took out his spinal cord — same dreams flashing by. Will I surf again was a more existential plea this time, but at least death no longer had any appeal. And about a month later, more dreams floating by: His rehab encouraged him to get active and play wheelchair rugby. He fell, hit his head, felt the same numb and tingly feelings as the first time. There was lots of second guessing, litigation. He came out of rehab worse off than he went in.

But this assembly isn’t about feeling sorry for Jesse. He tells them what he’s going to tell them, tells them, then tells them what he told them: “Tomorrow is not guaranteed, bad things happen to good people, never let anyone tell you your dreams can’t come true”: He was in a big movie, Step Into Liquid, got to surf at the U.S. Open, swam with sharks and rode the killer Cloudbreak waves in Fiji. He hangs out with celebrities, dates pretty girls, pilots his own 22-foot sport boat and pretty much does the things he loves to do.

No doubt, the kids got it. Jesse didn’t tell them to stay in school or wear seatbelts or be nice to their parents. He told them life is fragile, life is precious, we’re all just temporarily nondisabled and we’ll all need help someday. Doors close, doors open. “It’s up to you to make sure your dreams come true. One person can make a difference. Enjoy life.”

Jesse lives in Santa Monica, right on the Third Street Promenade, upstairs, with an ocean view. His paternal grandparents live nearby. Both Engelina and Richard Billauer survived concentration camps in Nazi Germany. They know something about dreams deferred. His grandmother’s suffering adds a layer of urgency, and inspiration, to Jesse’s message: “You can’t dwell on the small things — the traffic, whether your latte is too cold. Don’t wait until there is tragedy to tell people you love them.”

Life Rolls On began more along the lines of supporting “cure” research — much like its now-parent, the Reeve Foundation. Both organizations are currently more about active living and quality of life, with LRO emphasizing surf programs. “The cure, it’s always in the back of my mind,” says Jesse. “But I’m more about enjoying life now. I see people can focus too much on cure and it takes them away from what their reality is. I don’t follow research, but I hear about things. If there’s a breakthrough or an opportunity arises for some treatment, I know I’ll get a phone call.”

The Reeve Connection
When Jesse was in the hospital with a broken neck, he got a call from Christopher Reeve, who had joined the quad club the previous year. “He told me to keep my positive outlook.” Jesse had an audience with Reeve in a hotel suite six years later. Reeve gave his blessing to the name Life Rolls On.

LRO merged with the Reeve Foundation earlier this year. Jesse is national outreach director and that means he’ll continue to face audiences and raise awareness. He’ll help make connections and dig into his formidable Rolodex to raise money. He will also help put on events, such as the annual Night by the Ocean dinner (Oct. 17, Beverly Hills). He’ll even help out with peer-to-peer counseling if he’s asked to. “When I was first hurt, the most important part of my rehab was the people who came in to see me. These are people who’ve been through it, instead of doctors and nurses walking around.”

He says he learned about the real world and how it is to deal with it in a wheelchair. Now he’s the mentor. “I’ve done the same for others. I go in there, be myself, talk about their hopes and dreams. I tell them there’s a lot of opportunity out there. I tell them they can still do the things they love. I tell them they can still be cool.”

JB Factoids

• He had urethral surgery before discovering that hydrophilic caths are easier in and out. Jesse’s now an ambassador for a catheter company, Lo Fric.

• He’s got constant nerve pain but has had pretty good skin integrity. “I pay really, really close attention to the back of my body. I’m very paranoid about that area.”

• He is helping design a power surfboard. A prototype with an electric drive has been tested and work continues. “This would be so cool, I could surf by myself; I wouldn’t need any help.

• Jesse has just one tattoo, in honor of Nani, a Chihuahua that got run over by a car last year.

• Jesse was ripped off by a caregiver three years ago. He got the $17,000 back but advises that you don’t leave checkbooks around the house.

• Jesse is single but still has the dream of wife and kids. “That can’t be rushed,” he says.

Sam Maddox is knowledge manager of the Christopher and Dana Reeve Foundation.

The Many Faces of ParalysisBy Tim Gilmer

Angela Nguyen

In his post-injury life, Christopher Reeve was seen as “the face of SCI” and the most influential advocate for a cure. But over the years, the foundation that bears his name has become more and more focused on quality of life. To demonstrate that cure and quality of life are equally important, the organization sends ambassadors to speak to groups all over the nation, educating, informing and connecting people to a paralysis community made up of people from widely diverse backgrounds. CRPF has made the transition from being represented by one face to becoming an organization of many faces. Here are some of the people who spread their message of hope as Reeve Foundation ambassadors:

The Elder Statesman. Gary Karp, a T11 para who lives in northern California, is no stranger to New Mobility readers, having written regular features for the magazine until recently. Now he’s in his seventh year as one of the Reeve Foundation’s key ambassadors, speaking at rehab centers, hospitals and schools, and to physical and occupational therapy students at colleges across the nation. Beginning with a handful of speaking engagements his first year, he now books as many as 26 annually. His purpose is “clarifying the nature of the disability experience to those who lack firsthand experience with it.”

“People need to know they are capable of handling paralysis with support and resources, and most don’t know this,” he says. “The capacity to make adjustments is wired in to everybody,” he says, challenging the myth of the courageous, inspirational cripple. “People are more resilient than they realize.”

Karp has spread his easygoing brand of wheeler-wisdom to as many as 50 schools and 20 different rehab settings. “Rehab is where I feel most needed. I get a chance to model what they can’t envision yet, and my greatest responsibility is to be authentic.” His easy smile and gentle sense of humor go a long way toward helping his listeners feel at ease.

“I have my slot and I do my thing, and it has helped me develop as well, both as a person and as a professional.” The spinal cord injury community has responded to Karp’s message enthusiastically. In 2007 he was elected to the NSCIA’s Hall of Fame.

The 50/50 Man. No one exemplifies the Reeve Foundation’s updated tagline of “Today’s Care, Tomorrow’s Cure” better than Scott Chesney, another ambassador who travels widely for the foundation. “Their mission fits my life perfectly. I would love to be ‘cured,’ and I’ve never been more driven to experience it, but I know I might be in a chair all my life, so I’m going to be as happy and involved as I can be right now,” says Chesney, a T7-8 para due to a rare spinal stroke in 1985. His positive message is aimed at schoolchildren, although not exclusively. He talks to rehab and VA centers and PT and OT students as well. But his love for children underlies much of what he values most.

He likes to tell the story of his visit with the Dalai Lama during a world tour in 1999, four years after Chesney’s father died of a heart attack. “The Dalai Lama held my hand the whole 35 minutes I had with him, and with his thumb he started stroking my hand. His hands looked just like my father’s. I couldn’t help but cry. He knew I needed healing.” Chesney says that 35 minutes with the beloved spiritual leader helped make him a better speaker and a better man. “When you’re right with yourself, you’re more in tune with others’ energy.”

Three years later, in 2002, he and his wife Pratiksha had their first of two children, a milestone that tends to clarify priorities. “Being able to father my own children has always been more important than walking again.”

Empress of the Kitchen. Not everyone associated with the Reeve Foundation is a touring speaker. Some live exemplary lives in everyday circumstances. Erin Poyle, a C5 quad from Michigan who uses a power chair, discovered her passion for cooking years after being injured at the age of 17 in 1991. But first she had to go through a difficult adjustment.

“After my injury I was timid and self-conscious, generally fearful.” Three years later she made a conscious decision to “do something adventurous” and push past her state of inertia. “I’m not one to crawl, I just get up and run,” she says. She went to Woodstock with friends amid hundreds of thousands of music lovers crammed together on dirt and grass. Not exactly ideal wheeling conditions. But afterwards, she knew: “If I could do that, I could do anything.”

At 26 she moved to Denver, where she enrolled in a one-of-a-kind educational institution, the Jack Kerouac School of Disembodied Poetics at Naropa University in Boulder. “I ended up taking meditation and weird psychology classes with little practical use.” But the practical part was hidden in the process: She was on her own for the first time in her life.

She ended up quitting school, buying a house, taking on a roommate/best friend and experimenting with dietary choices to control her lactose intolerance. “I found out I had a knack for creating dishes. It’s extremely therapeutic, very freeing.” Her book, Cooking with One Hand Behind My Back, with its message of cooking as therapy and fun, is proof of her discovery. “If I can do it, anyone can,” she says. Her book is available on her website: www.erinscookin.com.

Man with a Purpose. You can’t talk five minutes with Eric Gibson without learning his life is dedicated to saving inner-city kids from falling into the destructive chaos of drugs and gangs. But it took a personal catastrophe to convince him of his mission. In 1993 he was shot five times in a drive-by while sitting next to a 12-year-old girl in a car. She was shot once and died.

“I was praying for my life the whole time in the ambulance, and when it dawned on me later that all it takes is one shot, I knew there was a built-in purpose. To slow my life down and put me where I am — to talk to kids.” Two years after his T12-L1 SCI, he got serious and started speaking to kids at schools. “The kids already know someone who’s been shot, but they don’t think much about it. There’s so much of if going on, so much desensitization.”

Gibson and Juan Garibay, another Rancho Los Amigos alum, are part of KnowBarriers, a mentoring project that has grown under the watchful eye of Rancho’s Greg Thompson, the organization’s executive director and a C7 quad since 1977. The nonprofit violence awareness group is making its mark. “We see kids years after we work with them, and they’re on the right path now. We follow them through the grades, mentoring them one-on-one.”

KnowBarriers has received Reeve Foundation Quality of Life grants, and both Gibson and Garibay are now Reeve ambassadors, traveling and taking their message to major cities in the nation. Now Gibson is working on expanding his purpose, and his audience. He sees a radio show in the future. You can learn more about Gibson on his website: www.wheelchair-with-a-purpose.com.

The Emerging Artist. Like Eric Gibson, Ruben Rios was paralyzed by a gunshot wound. Rios was shot in 1988 (not a drive-by shooting) in South Gate, Calif., close to Gibson’s stomping grounds. Injured at C3, Rios spent a long time at Los Angeles County-USC Medical Center trying to get free of his vent. A year later, still a vent user, he started going to outpatient therapy at Rancho Los Amigos, where he got his first mouthstick.

One day, bored, he started doodling. “I always loved to draw. We were poor and drawing cost nothing.” His mother was his best promoter. Robert Thome, an established mouth artist, took an interest in Rios, started mentoring him, and painting became a source of pride and income. “I had a goal now,” Rios says. “I wanted my work to stand on its own.”

It took years for Rios to develop his talent, and he’s still improving. In the mid 1990s he took up pointillism, creating images from thousands of points with a felt-tip pen. “It’s very painstaking, very time-consuming. To do a 10-by-15-inch piece can take two or three months.”

As a member of the Association of Mouth and Foot Artists, Rios gets a monthly stipend for his work, freeing him from having to promote himself. In 2004 he appeared in a video made for the Reeve Foundation’s Paralysis Resource Center. In 2009 Rios was one of the Southwest Conference on Disability’s keynote speakers. This year’s SWCD poster was created by Rios, and he’s now a multicultural outreach ambassador/speaker for the foundation.

His latest passion is working with acrylics. “I can get a lot more detail in a larger painting with acrylics.” You can see a gallery of his work at www.ruben..anthonyrios.com

The Youth Advocate. Robin Wilson-Beattie resists being easily categorized. A black woman from Arkansas who earned a degree in anthropology from the University of Memphis, Wilson-Beattie attended law school in England, then returned to Atlanta and was in the process of becoming a paralegal in 2004 when a rare birth defect required surgery on her spinal cord, resulting in incomplete quadriplegia at the C4 level. As if that wasn’t enough, she was also pregnant.

“Pregnancy was rough,” she says, “with severe morning sickness for eight months and preeclampsia, plus I was doing inpatient rehab at Shepherd Center.” After giving birth to Abigael, she was all but swallowed up by the process of adjusting to both paralysis and motherhood. “Where was the support?” she asks. “I didn’t see anyone like me. When I got out of Shepherd, they couldn’t find anyone to match me with in their “bridge support” program. “Not all of us are disabled from being shot,” she says. “Violence hits all races.”

She credits Shepherd’s director of advocacy, Mark Johnson, with timely prodding and encouragement. “He’s quite the pistol,” she says. In time, she channeled her angst into advocacy and discovered she had a passion for working with young people. Now she is director of youth advocacy for Atlanta’s Disability Link and a newly appointed multicultural ambassador for the Reeve Foundation. “My role,” she says, “is as an ally and a facilitator for the young people I work with.”

Wilson-Beattie has a clear vision of where she’ll be in 5-10 years. “I want to be in Washington, D.C., involved in policy and decision making for people with disabilities. That’s my dream.”

The Rolling Pilot. Michael Glen grew up in Roswell, N.M., the alien hotspot, but has never set foot in a flying saucer. His dad was a hot-air balloon pilot, though, so Glen has been around balloons since infancy. Still, it wasn’t until after his SCI in 1996 from a car rollover that he decided to get his license. The FAA, predictably, was skeptical. Ten years after his T11 level injury, at 31, Glen succeeded. “Part of the delay was due to my own adjustment to paralysis,” he says. “Things had to be under control before I could go all out.” Now his website — www.rollingpilot.com — proclaims he is “the first wheelchair hot-air balloon pilot.”

He stays busy as a Reeve ambassador, speaking, giving hot-air balloon demonstrations and rides. “I almost always bring the balloon with me when I speak,” he says. “I speak to anyone and everyone.” Besides speaking to schools, he also addresses disability groups and medical organizations. His surefire visual aid keeps his listeners’ attention. “I like to get out there and show people you can do what you want, you can go after your dreams. The balloon turns anybody into a kid.”

Glen himself is kid-like. “My wife, Shawn, is always saying to me, ‘How can you always be positive? Can’t you just be mad once or twice?’ I tell her, ‘Hey, I was dead.’ I try to put a smile on my face and just go for it.”

Glen averages about 12 hot-air balloon festivals a year, which keeps him on the road. Next up is Albuquerque, where the world’s largest hot-air balloon festival takes place annually during the first full week of October.

The Multicultural Model. Her mother is Thai, her father German, her husband Vietnamese. Angela Rockwood Nguyen is in many ways truly multicultural, but her beauty is all her own. In 2001, as a 26-year-old model, actress and fitness instructor, she was injured at C4-5 in a car crash near San Luis Obispo, Calif., on her way back from planning her wedding in San Francisco to actor Dustin Nguyen. Three years later the couple found themselves sitting close to Dana Reeve at a fundraiser in Laguna Beach, Calif. “I remember looking at Dana and smiling. When she looked at you, it was just you and her,” Angela says. “She had this energy about her, like an angel on earth.

Not long after that the couple was flown to New Jersey to become part of the Paralysis Resource Center’s multicultural outreach team. “We reach out to the Asian community. They fly us to San Francisco, New York and other major cities where they have meetings set up. Some of the people don’t even speak English. It feels great to tell them the foundation has over 50 different languages on its phone line. We educate them about what’s possible.”

She knows the doctrine of karma well, and how it can saddle an Asian family with a sense of shame about disability, but she doesn’t buy into it. “My father’s parents raised me Catholic. My mom was Buddhist. You could say I’m Buddholic. I do believe in past lives, but I think of my SCI as a blessing. I’ve been through so much and I’ve had to learn to focus on the present. I’ve been given a gift and now I’m giving it back as a voice for the Reeve Foundation.”

The Chapter Man. One of the Reeve Foundation’s latest initiatives is forming chapters, and to get the job done, they turned to Bill Cawley, 42.

Two decades ago, after graduating from Penn State, Cawley took a position with MBNA of America, the mammoth credit card company. After six months on the job, he sustained a C6-7 SCI in a diving accident. The company treated him right. “They told me to take time to adjust — I had a job waiting for me. They were amazing.” He rejoined MBNA a year later and spent the next 16 years with them.
In 1998, six years post-injury, he started his own nonprofit, Family and Friends Curing Paralysis, and raised about $750,000 to fund research over the next five years. He married Mary Elizabeth in 2002. They had their first child a year later, and three more over the next seven years. “After our first, I realized I had to make my family a priority.” Cawley decided to turn over his nonprofit to the Reeve Foundation. “I was working full-time, was no expert in fundraising or research, and its mission was virtually the same.”

Recently Peter Wilderotter asked Cawley to oversee the chapter building effort. “We formed five chapters in 2010,” Cawley says, “and there will be more in 2011.” Each chapter has its own identity and focus. Chicago hosts its Care-Cure Comedy Event at the House of Blues. Utah is known for its car show, “Keep on Rolling.” Arizona is program-oriented, with classes, peer mentoring and more. San Diego’s “Quad Foundation” is building up its golf tournament. And Connecticut is focusing on its own fundraising effort.

Cawley, Wilderotter and Reeve research honcho Susan Howley go on road shows in major cities. “We get people excited about research,” says Cawley, “and bring them together as a community.”

How Christopher Reeve Died … And Why it’s Important to Know
By Tim Gilmer

Even though Christopher Reeve lived much of his life in the public eye, the cause of his death is widely misunderstood. From hastily assembled news reports in the hours following his death, the public got the impression that he died from sepsis related to a pressure sore. It’s true that Reeve had at least one pressure sore at the time of his death, but his activities and behavior during the last hours of his life are not consistent with symptoms of sepsis, and an eyewitness account by someone on Reeve’s medical team clarified the real cause. Unfortunately, Dana Reeve did not speak publically of the real cause until Feb. 16, 2005, on the Oprah Winfrey Show, four months following her husband’s death. By then it was old news, and most people had already accepted the misleading news accounts at face value.

In response to Winfrey’s question, “What really did happen?” Dana, who was in California when her husband went into cardiac arrest, replied in part, speaking of his pressure sores: “It’s a constant problem if you have paralysis … and what I think happened, though, he was very sensitive to drugs that no one else would have any sensitivity to. They [the doctors] would say, ‘This is absolutely — no one on record has an allergy to this.’ He would try it, and he would have an allergic reaction. When I spoke with Eileen [the nurse who was with him at his Pound Ridge, N.Y., home] on the phone and she described what happened, that as soon as they started administering this drug that he’d been on two other times before, it was an antibiotic, it was not something that people had reactions to, she described what happened, [and] I said, ‘It sounds like a drug reaction.’ She said, ‘I think it is.'”

Christopher Reeve died of cardiac arrest caused by a severe reaction to an injected antibiotic that he had taken successfully on other occasions. He went into cardiac arrest almost immediately after receiving the injection.

Why is it important to know this?

The disability community’s reaction to Reeve’s death explains why it’s important to distinguish between the symptom that called for treatment and the actual cause of death. Many people, especially those prone to pressure sores themselves, asked at the time, and still are asking: “If Christopher Reeve, who had the best medical care possible, died of an infected pressure sore, what hope do I have?”

The answer is the great majority of people who are prone to pressure sores do not die of infections from them, and neither did Reeve. The condition that caused his death was relatively rare, an extreme tendency toward adverse reactions to drugs and allergies. Had he not been prone to these rare reactions, the chances are good that he would have lived a much longer life. The truth is, everyone who knew him well was surprised when he died, and rightly so.

Vigilance in preventing pressure sores is critical, but recovery can be expected if reasonable care is taken in a timely manner. Christopher Reeve’s death was the exception, not the rule.